Posted by Stephanie 9:40pm from the house
So, Sammy just finished his post, talking about being home for Christmas, and I realized that I hadn’t posted yet to fill everyone in on my, um, ‘eventful’ trip to Houston last week, so you all probably have no clue what’s going on! My apologies, things have been a mess. Here’s why….
A couple of days before heading to Houston for my checkup, I woke up in the middle of the night with pain in both shoulders. Not ‘oh, I must’ve slept wrong or pulled something’ kind of pain, but ‘um, something is really not right here’ kind of pain. Of course, the first thing I think is that I’ve got some new tumor somewhere that’s causing pain. How sad is it that that’s the first thought to pop in my head? But, after having shoulder pain in the summer of 2008 that turned out to be a huge liver tumor pressing on my diaphragm, can anyone blame me? Sammy talked me down from my teary spaz-out by reminding me that the pain from that was only in my right shoulder, and that there wasn’t much tumor related that would cause pain in both. I took some pain meds and was able to get back to sleep a couple of hours later, but the pain stuck around on and off after that. The morning that mom and I flew out (Sunday, the 13th), I woke up at 1am with the shoulder pain again, but this time it was only in the right shoulder, and it was much worse. Ruh-roh. It had settled down by the time we flew out at 5:30am, but during the flight it reared it’s ugly head again, and when we got to the Charlotte airport for our layover, I was a mess. Two oral doses of Dilaudid hadn’t given me any relief. We tried to get to the gate for our next flight, but I could hardly walk, and my breathing was ragged and shallow from the pain. All I wanted to do was get to Houston, so that they could do the CT scan I had scheduled for the next day early and find out what the heck was going on, but it quickly became obvious I wasn’t going to be able to get on that next flight. So, there I sat against a wall at a random empty gate crying and groaning in pain while the aiport medics came to check me out. Apparently, they only deal with life-threatening emergencies, so they had to call an ambulance to come and take me to the hospital. Man, was I ticked. I knew as soon as I got to the emergency room they’d want to do a CT scan to rule out a pulmonary embellis (aka a blood clot in the lung) because that’s exactly what they did the last time I had shoulder pain like that. Plus, they’d need to rule that out before allowing me to continue flying. Sure enough, we got there, they got me in a room and gave me some pain medication, took my insanely long medical history, and wheeled me off for a chest CT. When the doctor came in awhile later with the results, we all exhaled a sigh of relief when the CT scan showed no tumor in my liver, or anywhere else for that matter, Nor did it show a pulmonary embellis. Totally clear. Great. But, why the pain? They made sure I was feeling okay, then sent me on my merry way.
There we were, at the hospital, our flight to Houston rescheduled for many hours later, and we had no way to get back to the airport. Many of you know my sister lives in Charlotte, but this one weekend, just our luck, she was in New York visiting a friend. Luckily, her kind roomy Matt came to the hospital, picked us up and drove us back to the airport. While waiting at the airport for the flight to Houston, I was desperately trying to get ahold of someone from my medical team via e-mail to update them on the situation and find out what to do about the chest CT I had scheduled for the next day. Obviously, having just had a scan, I didn’t want to have another one the very next day unless absolutely necessary. We managed to get a copy of the scan from the Charlotte ER on disc to take with us, but usually Dr. Benjamin is picky about these scans when they don’t happen at MD Anderson, so I had to check. Being a Sunday, the Sarcoma Center was closed, and my nurse Mara wouldn’t be checking her e-mail, so I resorted to e-mailing the big man himself. I hated to bug Dr. Benny on a Sunday evening, but I knew he’d have his blackberry close at hand. Sure enough, I had a response in minutes saying it was okay to skip the scan. Whew.
Skip ahead a bit—we made it to Houston late, LATE on Sunday night and got settled into the hotel. Monday I had my bloodwork and chest x-ray done, then headed up to the sarcoma center. After a bit of a wait, we were taken back to an exam room to wait, when, out of nowhere, I started having pain in the right side of my back…kidney stone. There was no mistaking that pain, I’ve had enough of them. I had experienced a twinge of pain on that side a couple nights before that, but it was fleeting, and that happens occasionally, no big deal. This time, it escalated quickly, and by the time Dr. Benjamin walked into the room, I was pacing back and forth, sweating, and as white as a ghost. He just looked at me with huge eyes while I panted, “Kidney stone…right now…really bad”. Poor guy, he didn’t know what to do, he just stood there, looking back and forth as though the answer to my problem was hidden in the room somewhere. I obviously caught him off guard. 
Anyway, I made him tell me his thoughts from the path report and scan before I would consider getting some help for my current problem—I’m hardcore like that. First, he started by saying that the scan and x-ray show that I’ve still got some fluid in my left lung, and that I’m not totally healed up from surgery yet, so it’s too soon to do anything. He wants to give me more time to heal, about another four weeks, and then he’ll repeat the scan and make a decision about the next step. As for options, he started by basically reiterating what we knew from the path report—good news about the rib being clear, bad news about the lung nodule being active. He then went on to say that we could do a couple of things. A) We could put me back on the Gem/Tax combo, since we know it would work to keep anything else at bay. He said I could stay on it indefinitely, as in multiple years……..but, as soon as I came off it, if something was going to show up, it would, and then we’d have to do something more powerful to treat it. OR B) We could do nothing. What??! He explained that doing nothing would accomplish the same thing as option A without putting me through years of chemo—we’d wait to see if something showed up (hoping, of course, that this was the last of it), and if it did, we’d treat it. I told him I was surprised he didn’t want to put me back on high-dose Ifosfamide, my ‘wonder drug’. He said, “Well, I could, but I truly believe that if I do that, it’d do so much damage to you that I’d never be able to treat you with anything else ever again.” Wow. Okay, well, we don’t want that. Ifosfamide off the table. When I said, “Is this probably going to return?”, he said, “Is it probable? Yes. Is it likely? I don’t know.” This disease is so unpredictable, and my case so quirky. Boo. He said he wouldn’t make a definite decision until January, but right now he’s leaning towards not doing anything else. *GULP* Not sure how I feel about that. Don’t get me wrong, I love the thought of not having any more chemo, but I don’t like the thought of the last treatment I had being something that I knew wasn’t strong enough to put the final kapow on anything left in there. Scary.
At that point, I was curled in the fetal position in my chair, rocking back and forth, and needed to get downstairs to the ER. My nurse Mara, and one of Dr. Benjamin’s new fellowship doctors wheeled me down there personally to try to and get me past the long wait that undoubtedly comes with trips to the ER. We succeeded in getting me in quickly, since I was writhing in pain and quite loud, but they didn’t have a single room available. I wound up on a bed in the hallway, but hey, at that point I didn’t care if they treated me in the middle of the highway. It took several doses of I.V. pain meds, but I finally got some relief, and then was wheeled down for, yes, another CT scan, this one of my abdomen. It showed that there were several stones in my right kidney (as there were this past summer, the last time I had a kidney stone), and the one that was causing the current problem was lodged right where my ureter meets my bladder. Oh, and did I mention it was 6mm. That’s HUGE for a kidney stone. My last one was only 4mm, and it required surgical removal. I was eventually sent back to the hotel room with more pain meds.
Needless to say, after two trips to two different ER’s in two consecutive days, I was a little beat up. Okay, a lot beat up. And worn out. And all those other awful things. And what are the chances of all that happening?! I mean, really, who is that unlucky? Oh yeah, me. *sigh* Anyway, Tuesday morning came, and blessedly, the stone passed. I caught it in a strainer, and my eyes nearly bugged out of my head when I saw it. I’ve managed to catch stones before, but they’ve been so small—grain of sand size—that you almost couldn’t tell if you really had something. No mistaking it this time—that thing was the size of a boulder. Well, as least a large pebble, but when thinking of it going through something much smaller than itself, it seemed (and felt) like a boulder. I’m going to get it analyzed to see what it’s made of and if there’s anything we can do about preventing further ones.
I did see Dr. Swisher, my thoracic surgeon, Tuesday morning, and from his standpoint, I’m healing nicely and don’t need to see him again. Glad something on that trip went the right way! Mom and I headed back to Dayton that night as planned, thankfully with no more problems.
I spent most of the rest of last week recooperating from my adventuresome trip to Houston. My shoulder pain went away after the kidney stone passed, and both Dr. Benjamin and Dr. Swisher theorized that the two might have been related. If that’s the case, it sure is the strangest presentation of a kidney stone I’ve ever heard of. But, this is me we’re talking about. Even now, a week later, both shoulders are still somewhat sore, but I’m hoping that will go away soon. I got some Christmas shopping done at the end of last week, but then Saturday starting not feeling well again. This time, it was nausea, diarrhea, chills, and body aches. Spent the whole day on the couch. Yesterday morning I woke up and the chills and body aches were gone, but I still had the other two symptoms, plus I started running a low-grade fever. Great. The flu, or an intestinal bug, or something. Today, no symptoms except the persistent diarrhea. I’m chugging pedialyte and chomping Immodium like it’s my job, but so far, no relief. Mom thinks I should go to the doctor, and I will if it’s not any better tomorrow. All I want is to be well, just for a little while. Is that too much to ask? If it’s not cancer-related, it’s my shoulder, or a kidney stone, or the flu…..all in the same week. I’d like to be well for Christmas, that’s my wish.
So, there’s your update—crazy, huh? The good news is that I get to be home for Christmas, and probably for quite awhile. I’m going to use that time to get my body into the best possible condition, inside and out, so that it can fight for itself and keep anything else at bay. Well, I’ll start doing that as soon as I can eat anything substantial and kick this flu…… Have a good night all, and stay sane during this crazy holiday week!
--Steph
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